Who is included?
Naming people is a sensitive matter, so we asked for advice and were guided to stick with the phrase used by the Nursing and Midwifery Council rather than switch to Patient and Public Involvement, Public Contributor or Expert by Experience. Consider the following:
- The two groups ‘Service Users’ and ‘Carers’. In these pages, the phrase ‘service users and carers’ is used as if it was one group, but they have quite different insights. At Kingston University, service users and carers present separate sessions, to give student nurses insights into their distinct perspectives.
- Similarly, the two groups covered by the term ‘Patient and Public Involvement’ are quite different, as members of the public may not be specifically a patient or a carer in relation to a particular health issue, but may have an interest as members of the community and taxpayers.
- Representatives of patient organisations can speak on behalf of their whole organisation, but may have an official campaign position, rather than a personal story
- Staff in the organisation delivering learning opportunities or clinical services may have a kind of ‘dual qualification’ if they have personal lived experience of the issue under consideration as well as their paid role. Staff who are also service users and carers can have a specific role, but the bulk of material on these pages is focused on service users and carers who, without a fulltime contract, academic or clinical role, contribute to nurse education alongside those who do.
Some people prefer a narrow view and prioritise people with personal, lived experience and no other connection with the health and social care system, while others embrace ambiguity by including a small number of each of these categories in addition to a main focus on service users. Guidance from HCPC invites education providers to consider these issues but is not prescriptive about the answers.
Staff may also be service users or carers. Students may have previously been service users or carers, or may be using services or caring for someone who does whilst they study. Those involved in nurse education have a duty to make reasonable adjustments to enable people who use services or care for those who do to participate as service users or carers, students and staff, without erecting attitudinal or bureaucratic barriers. As leaders acknowledge their own personal circumstances in lectures, essays and discussion. the culture of the organisation changes and discrimination is eradicated.
As well as the protected characteristics covered in the Equalities Act 2010, diversity in this context includes the range of academic ability and socioeconomic circumstances, the depth of experience and proximity in time of particular health experiences, and the emotional cost of disclosure and level of support needed to enable people to participate. It was noted that a proportion of service users and carers involved with nurse education are former health, social care or education professionals, and many live in the local neighbourhood, thereby leaving out rural, suburban or inner-city voices.
Efforts to engage a diverse population of service users and carers will need to take account of:
- Protected characteristics covered under the Equalities Act 2010
- The range of academic ability and socioeconomic circumstances
- The previous experience and career trajectory of participants – especially as some service users and carers are also former health, social care or education professionals
- The depth of relevant experience. Some patients have had a typical experience, much like the majority of patients with this diagnosis, while others have only a glancing, superficial exposure to it, and yet others might be termed ‘super-survivors’ as they have a very unusual and intense experience, perhaps with multiple episodes of illness or a rare but illuminating experience of system failure.
- The proximity in time of particular health experiences. Some agencies insist that a specified amount of time needs to pass after a personal crisis before the person can engage in training or mentoring work. Others feel that historical experience is of less relevance compared to recent contact.
- The emotional cost of disclosure
- The level of support needed to enable people to participate.